Blog: Saving young lives - how can we help?

Friday 22 May 2015

“You have a brain tumour." They are words no-one wants to hear. But every year in the UK, they are delivered to more than 9,300 people. That's an average of 25 patients every single day whose lives are turned upside down by a brain tumour diagnosis.

I was one of these people.

My name is Chandos Green. I am 19 years old. I first had surgery to remove my brain tumour when I was three. I had another operation at six, and then a third after the tumour recurred as I was beginning university.

My brain tumour has affected everything in my life, from my education to day-to-day activities. The experience has been a stressful one as I move from doctor to doctor and hospital to hospital.

And something else has happened: as I have grown older, my experience has led to more questions than answers.

I know now that if you are a child or young person with brain tumour symptoms, there can be a long delay between your first GP appointment and your diagnosis.

That shouldn't happen. Brain tumours are the biggest cancer killer of children and young people in the UK. Almost two thirds of children who survive a brain tumour are left with a life-altering, long-term disability that might have been preventable if the disease was spotted sooner.

So why is it taking many weeks or months for brain tumours to be diagnosed after the first symptoms show themselves?

There is some good news. Thanks to the work of The Brain Tumour Charity's HeadSmart campaign to raise awareness of childhood brain tumour symptoms, the average time to diagnosis has fallen recently.

In the four years since HeadSmart was launched, it has dropped from more than nine weeks to less than seven.

But we have to bring that figure down even more. There are countries where the average diagnosis time is five weeks or less. That's what we have to achieve, too.

One way to make progress is to make sure HeadSmart symptoms cards are sent to every school in the UK. It's not only GPs and parents who need to know about the warning signs of a brain tumour, it's young people themselves.

Another is to make sure that training for GPs includes use of the HeadSmart campaign.

In the run-up to the general election, The Brain Tumour Charity published a manifesto which called for the new government to bring in both of these policies.

Now, with new MPs taking their seats in the House of Commons after the election, this is an ideal time to push for their help to bring in these changes.

The potential for change is there but we need to make our voice heard as loudly as possible to ensure it happens.